Janet’s ET Story
When I was a little girl, my dad introduced me to a beauty queen. (Her name was Ann Sidney). Dad was friends with her father. He knew it would be good for his shy, young daughter to meet this beautiful woman, who actually went on to become Miss World. Her body measurements were perfect. Her hair was brown, like mine. She was humble and kind enough to talk to me. The main thing I took from this short meeting is that she had a wonderful smile. I knew I was not beautiful, but I learned that I could at least smile. I think I practiced my smile in the mirror after our meeting. It’s not hard to smile when you are happy. I had been through the trauma of polio so perhaps I was a bit subdued because often when I was feeling life was really going well, I was waiting for the next relapse. I had pneumonia several times. Somewhere along the line I learned to live in the moment – enjoy now and be happy – let it out.
In life we are not always happy, but I found when you are hurting you can pretend to be happy and if you work at it, you can change how you are feeling and actually become happy again. Have you ever walked somewhere and noticed everyone smiling at you? The reason could be that there is a smile on your face which they are responding to. (Or do you have something on your teeth?)
Anyway, you do not want to be that miserable person with the weight of the world on her shoulders. Try to be the cheerful one who can lift people’s spirits.
My dad was a shop keeper. He always greeted his customers with a smile. This was also a very good lesson. When people came to my desk for help, they were customers to me so I knew how to treat them after growing up watching my dad serve his customers. I loved working with people. I’m retired now.
Recently I moved to a new house and have made a new bunch of friends. Two neighbors have Parkinson’s disease. I have empathy with them, and it has made me think about my essential tremor (ET) so I decided to write this.
I Have Essential Tremor
Essential tremor affects my life, but I can’t allow it to stop me from doing things. The following is just how I cope. Often people with handicaps take longer to do the simple stuff. We have to be creative to find many work-arounds. Essential tremor is progressive. Once I got to a point where it was no longer possible to hide my tremor, I also started to be less embarrassed by my shaking hands and more comfortable about asking people to help. One example is when the form says “print your name.” If people want to read the name, they had better write my name for me. I also keep some of those mailing labels people send you if you donate to some cause. I carry a sheet in my purse. Often you can peel one off to put on a form instead of trying to write your name and address.
I seldom write checks because I can pay my regular bills on-line. It’s so simple once you have it set up. I am so thankful for this feature.
However, there are times when you do need to give somebody an actual check. I usually ask them to write it themselves, then I sign it.
If I write a check, it does still get honored. It’s good that we have to write the sum both in words and then again in numbers. My bank probably has a note on my account about my terrible writing.
My signature is awful, but I do have a signature stamp. For the stamp to be created of course you need to give them a copy of your signature. I practiced my signature multiple times and used a rather thick pen. I selected the best version to have made into the stamp. If I have to sign multiple papers, I can use the stamp, although some offices do not like the signature stamp and insist I scrawl my shaky signature on the document for them to witness.
One time I had to sign about 12 pages of documentation so I was very thankful for the stamp. Now often documents are on-line and one can just click to give an electronic signature. This is wonderful.
At work or in some other social scenes people pass a birthday card or sympathy card for signatures. Obviously, I want to sign but can’t write an appropriate note, or even my name. To resolve this problem, I ordered another stamp that has just my first name and a tiny flower. This works for circulated cards or guest books. It’s small self-inking and I carry it in my purse.
My writing is illegible, so I type addresses or paste them from my on-line personal address list. If I type anything I need to check for double strokes and other errors before I PRINT or SEND.
There is an app called Steady Mouse which can be installed on the computer and adjusted to help take care of double strokes and absorb some issues with the tremor.
I buy blank adhesive labels from Staples. I like the ones that have 10 to a sheet. I have a folder in WORD called ADDRESS LABELS. Now there are several different sheets and sometimes I already have a label ready to use on one of the sheets. If I need a new address label, I find a sheet in my file that still has open space, type the new address and place the half-used sheet in the printer to get the label I need printed. I then peel it off for the envelope and keep the sheet for future use.
Managing Touch Screens
More and more places have introduced touch screens which probably saves hiring people and gets things to move more efficiently, but for a person with a essential tremor they are a challenge.
In the grocery store I used to try using the self-check because I thought I could, and I can, but after discovering how hard it was to be a checker and feeling embarrassed at how slow I moved with people waiting behind me, I have given that up, and the unneeded stress. I will line up for a real person to check my purchases. Checkers are usually very pleasant humans who place a rubber band on your box of eggs to ensure it doesn’t open and tell you to have a nice day. The machine’s computer voice saying “thank you for shopping with us” is not quite the same although I do usually answer, “you’re welcome.”
My doctor’s office also has the E-check in. I can do it at home, print the sheet and then scan the bar code. That is not so hard.
Using Debit and Charge Cards
Using debit and charge cards is not usually a problem. I just key in the pin number and phone number to get the member discount. Now quite often they don’t even need a signature for charges.
It’s been my tradition to send Christmas send cards to friends and family. I loved doing it and would add little personal notes on them. Then I started the annual letter to family and close friends. I can do the letter because it is typed, but cards are difficult. I made address labels and that took care of the envelopes, but I didn’t want to sign my name on the cards with a shaky hand. The best time was when my son and two grandkids sat down with me at the table and wrote on each card from us all. Some were in my son’s handwriting, some in my granddaughter’s and some in my grandson’s. I just stuck the mail labels on each envelope. We don’t live together now so I had cards printed from me, with just my name. I deliver them to my new neighbors in this area. Other people get my annual Christmas letter via email. Some people don’t even read those letters, but I do. I love getting other people’s annual newsletters.
Eating and Drinking
In the office we often went to a restaurant for lunch as a group. I was nervous about it because of my tremor. Just getting a few bites on the fork was incredibly difficult and I was embarrassed which made it worse. I took a “to-go” box back to the office. Also, drinks were hard to get to my mouth. I can ask for a straw and pick up glasses with two hands. One time I remember not drinking at all because I could not lift the glass without spilling it. Alcohol can actually help steady a tremor. When my husband and I went on a cruise, before dinner we went to the bar for a drink and this steadied me for an hour’s dinner. Afterward however, I was fighting to stay awake for the entertainment. I no longer use alcohol to help the tremor. I think I would need more than one glass by now and there is a rebound effect.
Becoming More Comfortable with My Movement Disorder
I’ve had a tremor for a very long time. I thought it was part of my polio weakness because ET started in my left arm which was paralyzed when I had polio. My neck was also affected by polio and now I have a head tremor. I tried to hide the shaking and often I could. Stress made it worse but if things were going smoothly, I didn’t shake. Over time the tremor increased. It is now in both arms, my head and my voice.
It was embarrassing and I did not want people to see me shaking. This of course made the shaking worse. I was trying to blend in with a normal world. Now I am older and am more accepting of the condition so I can talk about it if it seems appropriate. “No – it’s not Parkinson’s – it’s essential tremor, a movement disorder.” People don’t know about ET. Neither did I until I was given the diagnosis. Essential seems like a strange name for it. It’s not essential to me. Everyone has heard of Parkinson’s but ET is eight times more common. It’s not life threatening and is often unnoticed when you are not moving. It just kicks in when you are trying to use your fine motor skills for things like eating soup with a spoon or signing your name, etc. It’s very annoying.
Meeting Others with ET
The first time I met another person with ET I was so thrilled because it made me feel I wasn’t alone with this problem. My husband and I shared a table in a restaurant that was so crowded people had to share. The man started to apologize for his tremor, noticeable when eating. “Is it ET?” I asked. “Yes” he replied. Smiling I said, “I have it, too.” Are you surprised that we had both ordered food that we could pick up with our hands?
ET Support Group
Much later in my life, I joined an ET support group and that was so amazing. Just imagine a whole room full of movers and shakers having issues with their hands, heads and voices. It was wonderful. I felt so at home. We didn’t have to pretend to be normal. We could relax, be ourselves and discuss our issues.
Over time we have had several presentations about ET research and treatments. Ranging from drugs, devices to help absorb the tremor, and brain surgery. People have had good results with all the treatments offered including using CBD oil. I have personally tried the standard drugs, but they did not work for me. We are all different so treatments that work for some do not work for others, and there are usually side effects to consider. One must weigh the benefits against risks a decide which treatment to try. I don’t want to wear a big glove on my hand because I feel that would just draw attention to the disability and make me feel very self-conscious. And brain surgery may not be a good choice for me. All the treatments offered have degrees of success, but also some risks. As ET is progressive even good results may not last.
Since COVID we have not had a meeting of the support group, but I enjoy reading the IETF magazine Tremor Talk and viewing the closed support group on Facebook (the Essential Tremor Awareness Group). I try to keep a positive outlook on life by reviewing all the good things that happened during the current day when I lay down in bed ready to sleep. Usually, I can go to sleep with a smile on my face. Of course, I often don’t stay asleep all night. In the morning when I wake up, I plan items to achieve during the day. This can be simple things like sending jokes by email or visits with neighbors, paying bills and calling people on the phone – simple goals I try to achieve.
Although COVID distancing shut down some of our social interactions, it’s important to interact with people. We have found safe ways like picking up the phone or using the computer, using masks and keeping our distance. I know I need people so I have to get out in the world.
Life is not all peaches and cream. Sometimes it’s sad and hopeless with problems we can’t resolve. COVID is just one more challenge. I got the vaccine plus the booster which I strongly believe helps me and those around me.
Many things are beyond my control, but I can’t allow my disabilities to stop me from living my life. I think having a disability gives you more compassion for others. Sharing with friends and having a sense of humor also helps. It’s important for me to remember I am not a victim – I am a survivor.
5 thoughts on “Smile and the World Smiles with You”
Practical & positive. You have smiled on me today. Thank you.
Good to hear. Keep smiling.
Very well-written with great ideas. Thanks for sharing your positive ET life!
Thank for sharing your experiences .keep Smiling
Just been diagnosed with ET. Thanks for sharing. Very helpful to me. Keep smiling K
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